Discrimination

Sunday, August 5, 2012

Discrimination.

It's an ugly word.

And it's even uglier practice.

It's one of the things that I think motivates us the most as parents of children living with diabetes. At least it motivates ME. I want so badly for my daughter to KNOW that she can do anything - even though she has diabetes. That diabetes is not going to stop her. It's something that we talk about a lot and really pound into her head... YOU can do ANYTHING.

And that's true. A person with diabetes CAN do anything!

Except when someone tells them they can't.

A few days ago my friend, Michele, sent me a message. She was upset. She was crying. She didn't know what to do.

She had taken her children - including her daughter with T1, to a local water park. Her daughter was told that she could not go down the slides if she was wearing her insulin pump (she wears an Omnipod). She was told that it was a liability and that the rule was no plastic so if they let her wear it then they would have to let anyone with plastic on their swimsuit go down the slides.

I can see why she was upset.

Plastic on a swimsuit does not compare to a medical device that infuses life sustaining medicine to your body.

Now, it is possible to take an insulin pump off for awhile? Yes... technically. But you take a risk...

Unlike insulin pumps with tubing, the Omnipod is attached directly to the body. Therefore, you can't take it off and on at will. You can't reattach it to give yourself missed basal. When you take it off, you terminate the pod and if you want insulin you have to fill a new one and insert another site into your body. You can wear the Omnipod in the water and we have found it great for swimming and other water activities because Sweets is able to get the insulin she needs continuously - her basal insulin rate is never interrupted.

Sure- you can take an insulin pump off. But when you do, you are not getting the basal insulin that is infused into the body continuously throughout the day. You might be able to go without it for a little while. But not an entire afternoon. Certainly not a whole day. Ketones develop quickly without basal insulin and high bg's creep up. We have found that just a few hours without basal can leave Sweets with high ketones, high bg and vomiting.

So, by telling this girl that she could not wear her pump, they were telling her that in order to participate that she had to - basically - put her life in danger. I know that sounds dramatic. But how many times have you witnessed what missed basal can do to a person with diabetes? It's not pretty. Every person is different. Each day is different. But going without basal for an extended period is NEVER a good option.

Not to mention that she couldn't eat. Without the pod attached, she would be unable to bolus for food.

The water park said that it was a liability and I understand that they could be concerned about it hurting the person wearing it or the plastic damaging the slides. However, she was wearing it on her stomach. You don't go down slides on your belly. And she wouldn't be hurt (nor would anyone else) if the pod came off.

The water park was unwilling to work with this family. And that makes me very sad. And angry.

Because all of what I've said about basal rates and food boluses is not the point.

The point is that a person was denied access because of her insulin pump.

An insulin pump is not a piece of plastic decoration on a swimsuit. It's not a necklace that you can just take off. It's a medical device that a person needs in order to stay alive.

Under Title II of the ADA, state and local governments must provide you with services that are not any different from those they provide people without a disability. They must not screen out or exclude you because of your disability. They must modify their policies and provide reasonable accommodations as long as doing so does not pose an undue burden. For example, a court house should permit you to carry your diabetes supplies with you—this might be a modification of a general policy against allowing sharp objects and food.

All this little girl wanted was to go have fun... just like everyone else.

When you live with diabetes, you are used to feeling like the odd man out at times. You're used being the only one counting carbs and delivering insulin. You're used to being the only one testing your blood before you eat. You're used to taking your lunch to the nurse. You're used to leaving class. You're used feeling different.

Because no matter how much we try to make sure our kids know that they can DO anything... we can't help that they are the only one in their school with diabetes. We can't change the fact that none of their friends wear medical devices 24 hours a day. We can't change the fact they have to test their blood before they eat even if all their friends are digging in.

We can't keep them from feeling different.

We encourage them to keep going. We tell them how incredible they are. How brave, special, strong, important. We tell them that even though they might feel different at times, this disease does not have to ever hold them back. Because they CAN DO ANYTHING!

And then someone tells them they can't.

Why??

A reason that, to me, makes no sense at all.

As far as I'm concerned, this water park FAILED miserably.

Don't you agree?

If so, would you be willing to write to this water park and ask them to change their policy about people with diabetes wearing insulin pumps?

This makes me so mad. My daughter wears the Omnipod and no, you most certainly just cannot "disconnect" from it - in fact, we were at a water party yesterday and hers fell off and even with all of the activity we still had high BGs. Email sent and I will be calling later when they open!

Thank-you so much for posting this. I am doing this everyone child with diabetes and for all those parents that okay two so far that have been in contact with me over this situation. Their children were also denied from being on a pump. I am the first to stand up to this water park and fight for what is right. I am still very upset and emotional over all of what happened last Thursday August 2,2012. We new going in that this would be an issue only because we knew of the no plastic rule. So I had my Sweet and Sassy well prepared. After they denied and we walked away I ask her how it made her feel. She said " I was hurt, mad and I am not different but Mommy I knew you would fight for me!" This made me know that I was doing the right thing and showing her how do not back down when someone tells you, you can not do something that every other kid does.I would greatly appreciate any letters or comments on their website. So we can all stand up for the T1 community we all must stick together!

Can I just tell you how my blood is boiling right now!? My son wears the Omnipod and we go to Splash Lagoon Waterpark (also in Ohio) for his D-Anniversary every year. I say we all get together and take our T1D kids together to stand up to their so called rule! I want to see them kick all of us "plastic wearers" out. GRRRRRR

I wrote on the Park's facebook wall. This is just wrong. I understand that they would ask her too take it off before they knew what it was, but after explaining that it was a medical device that kept her alive... it's awful. Kids with diabetes just want to be normal kids, and it is situations like these that make them feel different. All I ever wanted when I was a kid, was to be like everyone else. I understand what the family is going through, and I hope we can all make a difference.

I sent my letter right off can we get something on fb, so we can follow the situation and comment there also ... or at least post and updates please. I made a few suggestion to them on how they can right this wrong, hope someone there can be open and not just defensive about their behavior, it's OK to make an error in judgement and correct your ways it's down right stupid to defend your offensive behavior just for the sake of not admitting a wrongdoing...

Posting a comment on their facebook page right now. I come from a family of diabetics and it's amazing to see everyone standing up not just for that little girl, but for everyone with diabetes. Such a shame.

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* Disclaimer *

I am not a doctor. I just play one in real life!

I am happy to share with you what works (and what does not) for us as we do battle with Diabetes. However, keep in mind that this is just my opinion and should, in no way, be taken as professional medical advice.

Please contact your doctor or endocrinology team before changing your current treatment.